TAKE FIVE!

Yes…….I admit it I’m a Jazz fan! Don’t worry though, I’m not about to lecture you on the work of the Dave Brubeck Quartet (unless you really want me to of course…..hmmm I just detected the Anna Kennedy “Get on with it Austin” look lol)

I want to take a slightly different angle with this article but one that I feel is VERY important.

‘Pressure’ in all forms is a very powerful force. In nature we witness ‘pressure’ when a volcano finally blows releasing all that stored up inferno of energy. ‘Pressure’ surrounds us in different forms each and every day, A car tyre requires an amount of ‘pressure’ to work properly and water runs through our taps thanks to the ‘pressure’ that pushes it along.

‘Pressure’ can sometimes be a good thing. It can motivate people to do better within their role in life, but, all too often ‘pressure’ can have a very negative effect on each and every one of us.

How many parents reading this have had those days even weeks when everything has JUST GOT TOO MUCH AHHHHHHHH!!! You try your best to make life as accessible for your child or relative on the spectrum as you can. You put up with all the dark moments. Side comments are thrown at you. Objects are thrown at you. Things that are valuable to you are damaged. You have another ‘care plan’ to read. Another letter to write to the school who don’t understand why they act the way they do. Clothes that you worked hard to pay for are torn and ruined within minutes. Looks from people passing you on the street. Comments heard from others close to you that don’t understand the meltdown you are dealing with. The blunt literal comments. No thanks. No help. No sleep. It all builds and builds and one day BANG!!

Now, I’m glad to report that on the whole we as human beings don’t tend to explode! But that doesn’t mean we don’t feel the effect of all that pressure. When it blows it makes it hard for us to stay in control and everything seems harder. We may just walk away in anger and then hate ourselves even more for walking away. Our understanding and ability to do things in a rational manner is impeded when under supreme pressure. Someone that is calm and having a great day can deal with that meltdown that comes along a lot easier than someone who really is at their wits end. The calm person will reach an easier conclusion quicker because they themselves are not adding to the problem of the meltdown. Someone who is tired, exhausted, anxious, angry, frustrated will take longer to reach that same conclusion for a meltdown because they themselves are adding to the situation. A child/person having a meltdown has no ability or reasoning of what someone else is feeling at that moment in time. They are the one in crisis and they need help/support at that moment in time so they need and expect us to fully understand what is happening. If they see the person with them is agitated and angry that adds to how they are feeling…… ‘I need help so why are you stressing….why shout when I’m having the meltdown’ there is a great loss of stability when having a meltdown so it must be a comfort to them that the person with them ok may not have the answer to solve the situation there and then but they are calm and in control, you feel safe knowing they are there. If your having a meltdown and the person with you has lost it as well then that ‘comfort’ isn’t there, extra panic and anxiety sets in ‘I don’t feel safe’.

So what can we do? We can’t change or solve ALL those problems and experiences we have to face, BUT, maybe we can change how we get through them?

If I shake can of fizzy drink the reaction inside means pressure builds up. If I ask someone whether it is inevitable that the drink will ‘explode’ out when I open the can I think 95% of people would say YES. If I did open the can straight after shaking it those 95% would be correct. So what happens if I don’t open it straight away? If I just give it 1 minute before I open it. That small amount of time changes everything that is about to happen. The reaction within the can stops and the pressure eases. Now, when I open it, those 95% that said YES are suddenly proven wrong and the small handful that actually stopped to not presume it was going to be opened there and then but thought ‘hmmmm its not inevitable that it will explode out because the time you open it makes a difference’ are proven to be right.

This resting of the fizzy drink can is something we can all replicate in ourselves. A holiday or break would be the greatest thing but we know that is not likely to happen so we need to help ourselves where we can in any little way.

It is never easy for anyone caring for, or looking after, a person on the spectrum to have time for them self. Moments are there but I think all too often we miss them or don’t see them. Just a couple of minutes, even only 1!!, can make a huge difference to what we are doing and how we are feeling.

One afternoon in a residential home I was working in we had one lad who at a certain time each and every year showed a heightened pattern of challenging behaviour. This afternoon in particular was in the middle of this period of time and I was working with him. He had become so aggressive that it was not an option to just take him out for a walk as he often did in an afternoon. He was obsessing over things and the trouble was you wouldn’t know what it was going to be until it happened! So for example he might suddenly obsess over a particular colour and want to be close to it or want it as far away from him as possible. This was a big and very strong young adult. If he wasn’t happy with something then it was leaving the building in any way he could get rid of it and the same would happen if you were out walking. If he saw something he didn’t like then he would very likely smash into a house that may be being passed or shop or vehicle to get it and get rid of it and you could not stop him. So, for his own safety and that of others at times when there was only 1 person assigned to him he would have to stay in. On this afternoon he suddenly decided that he hated newspapers……great…..they were everywhere! Two of the other residents were folding up papers with their support workers ready to go and do their paper round and another one was sat with a pile of old newspapers because he liked to sit and fold them up. Nothing else would do, he HAD to have newspapers to fold. If you know someone is going to have an issue with something you can ensure it is not in their environment but with him suddenly taking against things there was no warning. There was chaos! I was getting hit…thumped……pushed and all manner of things in trying to distract him into leaving the others papers alone. This on its own I could handle, it’s not nice but hey that’s the job. While this was going on and I was trying to get him to have a nice relaxing soak in the hot tub one of the other residents who was new and had a history of being very volatile and could bite anyone near him etc went into a pre-seizure state of mind where his attitude became unsettled. The two getting ready for their paper round were sent out with their staff so there were less people around and a ‘low arousal’ environment could be put in place. The only problem was the member of staff with the ‘new’ resident hadn’t experienced behaviour like this so began to panic. With her panic setting in the resident she was supporting picked up on this and started to lash out more and more even chasing her around. The poor lady ended up hiding behind me. So now I have two very strong adults both with heightened behaviours. Somehow I managed to show the other member of staff how to best react to these things and after having earned myself several more wallops soon had one in the hot tub and one on the garden swing. Both were smiling away as if nothing had ever happened and content with the moment. It was 6pm and I was on a double shift so had already done 10 hours and had finished late the night before with little sleep as I was on sleep in duty and had done 14 hours each of the previous 4 days. I was tired and drained. Soon the others returned and also a group that had been off clothes shopping. Within that group was a new Deputy Manager who had gone out with them to see how they all were in different environments. A great manager not relying on paperwork alone but happy to get her hands dirty to see how things really worked.

Arranging the main meal for the evening could be a stress as a number of residents had different requirements and then…who is going to listen to what ……who has the television on….what they have the television on etc all this chaos some would struggle to get through as shift leader but I always coped with no issues……..except for this day. I was irritable and kept mishearing things, I was snappy with other staff, I started to do EVERYTHING because I thought others weren’t doing things right. Being tired and dealing with the 2 violent guys had taken a lot out of me putting me on edge without my noticing or being aware of it. This is a recipe for disaster!! Luckily the new Deputy Manager was watching all this go on as she mucked in. She stopped to ask the member of staff that had been with me all afternoon what had happened and she read the shift report up to that time. After gathering this info she walked up to me and said ‘Austin…..have a fag break’. I looked at her puzzled and said ‘but I don’t smoke’. Her reply was simple ‘I know you don’t smoke but your having that break NOW’. Pride sets in and of course I said I was fine nothing to worry about. Inside your annoyed because you think ‘hey I’m a tough person and nothing stops me’. The lovely Deputy Manager could see me obviously having these thoughts and said ‘Austin, you solve things and deal with things for us because when you are at your best your dynamite….but right now you are tired and not at your best and I just want you to go and switch off for 10 mins and then come back’. Begrudgingly I did as I was told. I sulked for the first minute and felt pathetic…….then I relaxed a little…..I watched some birds……could see the sun going down. When I walked back into that building Yes I was still tired Yes I was still stressed but the ‘Pressure’ within me had just been eased so I was back to being me….stable and in control. I was the fizzy drinks can that had been shook and kicked all over the place but rather than let it build and explode someone had waited a minute before opening me.

Ok you cry so why are you boring us with what happened to you? Simple, too often I think people give advice or suggestions without ever having ‘been there and done it’ also people point fingers at others. They mean well but in picking fault they make people feel bad. I give the example of myself so I can say to you all I AM ONLY HUMAN. I’ve been there, I’ve slowly felt that control slip and chaos set in, I’ve let it all get to me, so I don’t give suggestions as someone that ‘thinks they know better’ I give them as someone that has learnt for himself from his own failings.

Now I know as a parent you can’t just say ‘oh excuse me for 5 minutes’ and walk off but you can work together. Give each other, when you can see you are both stressed, those 5 minutes to go and walk away while you stay carrying on and then swap round. In those 5 minutes you can do whatever you like lol Cry, Scream, feast on ice-cream if it helps! But whatever it is that does help DO IT. Just take those small few minutes to pat yourself on the back and say ‘WELL DONE’. All parents and relatives of those on the spectrum do amazing things and yet you rarely tell yourselves that.

Even as a single parent you can do the same. It’s not just about walking away but about just finding a minute to think something different. If you are tired….frustrated….at the end just keep doing what you are but say to yourself ‘Hey I’ve done really well here’ ‘Everything is going to be OK’ Give yourself support and comfort. You’ve dealt with all these things before so remind yourself ‘hey we’ve got through this before and will again now’. Even if someone is having a full blown meltdown ensure they are safe but while there just take that moment to gather your thoughts because I PROMISE you it is easier to deal with everything with that little bit of control than when it has all drained from you.

Every night when you go to bed, which I know for many of you may not be for very long! Just tell yourself before you get into bed ‘Well done, you did great things today’. On the Rare occasion you get to have a cup of tea parents ENJOY IT!!! If the chance is there to sit down then do it! Take a load off those feet and your head for just few minutes. Those minutes I spent outside gave me the strength to get through and allowed me to remember I CAN DO THIS. Despite my hard work and the extra hours I put in that still doesn’t compare to what a parent does because even if it was just for a few hours at night I got to walk away. I might still think and worry about those I worked with but they weren’t always there needing me. A parent lives, breathes and exists under that umbrella of Autism 24 hours a day…….7 days a week….52 weeks a year……10 years a decade….on and on and on.

Autism in all its many different forms can be challenging, difficult and often cruel to those that are on the spectrum. Those people would struggle to get through life and achieve the simplest things they do without YOU. Every child needs its parent, BUT, every Autistic child needs its parent and that love, stability and comfort more than anyone else can ever comprehend. You do and put up with things that the majority of other people could never imagine handling so find that time for yourselves no matter how short and stop and think….

The above words would indicate a story is about to be told,
but stories have endings and what I am about to describe is a constant ‘work in
progress’………

My Son was misdiagnosed as being only (as if that’s not
enough) Autistic from aged 3 years old. No consideration / investigation or
acceptance was given to the systematic trauma and abuse he suffered until he
was aged 6 years old which was when I gained full custody.It was only when he was 16 years that he was
officially diagnosed as having / still going through Reactive Attachment
Disorder.His current Diagnosis is RAD /
Autistic.

When Sam was first diagnosed as being Autistic I knew
nothing about Autism.Being a parent it
was, totally necessary, to learn as much as possible about it so I could
provide the best possible environment for him.My first step was to search for what was available within the Borough of
Hillingdon..it was a short search…there was nothing regarding support for
Autism..well that is not exactly true..there was a brand new group that had
been formed called the Hillingdon Autistic Care and Support group.I telephoned the number given and attended a
lunchtime meeting. Apart from the organiser Anna Kennedy, I was the only one
there….the group has grown enormously since those days but the weekly chore of
putting seats out, making coffee and biscuits was always worthwhile when the
effort was rewarded by the sight of new people attending desperately seeking
help in discussing their problems (not all related to Autism!) and finding a
much needed unique empathy one finds with parents of other Autistic children.

Being misdiagnosed (understandably in some cases) the
dilemma I had, was in trying to identify what was my son doing for Autistic
reasons as opposed to RAD reasons. This paradox still exists today. Was it
possible the reasons could be 100% RAD..YES..Could the resons be 100%
Autistic…NO.

This by definition must mean that any environment Sam is
placed in and the ‘parameters’ subsequently placed on him, should be borne from
proven consistencies he has exhibited. Dismissing his parent (little old me!)
as ‘in denial of his son’s Autism’ (which I am NOT) as of no real source of input
whatsoever, not only left me totally frustrated but ensured that I was forced
to take a ‘back seat’ and watch a succession on schools use methods and systems
not only proven not to work with Sam but
directly actually feeds his RAD and maintains with circuitous paradox.

During the last five years Hillingdon Council have ‘Thrown
money at the problem’ having paid just under £1,000,000 on my son’s
‘education’. The net result being that he had to be taught when at home as the
school, using wrong techniques, failed to teach him (as they concede) even one
single word.

He left his last ‘School’ at the end of July 2011 and
finding a suitable ‘placement’ was essential.Hillingdon wanted him to attend (termly) a boarding school in Mid
Wales..this would have destroyed Sam for a number of reasons…The cost, once
again, would be phenomenal. This highlighted perfectly the council’s
misunderstanding of Sam’s needs.After
15 years I am tired of screaming “Why won’t people listen to me” I am sure that
this sentiment resonates with many in similar positions and the sadness is. I
am far from being alone with this thought.

Why are Authorities reticent to change their theories to fit
the facts as opposed to changing facts to fit the theories?

During my ‘dark days’ and sadly there were many, I sought
advice from many people, Anna Kennedy, did not escape my desire for answers..she
provided me with information and direction to help with Sam and was always
appreciated.

West London Community College in Church Road, Hayes was
identified as a possible placement. It transpired to be ‘run’ by Anna Kennedy.

I was concerned that this placement would ‘fail’ if the
school did not ‘understand’ Sam.The
college however is totally ‘student based’ and therefore they are prepared to
‘do what works’ for their students (within reason and safety of course).After lengthy discussions, it was agreed that
Sam should be placed there.Prior to him
starting I was invited to ‘have a chat’ with some members of the staff.I arrived at 3:30pm to be shown into a room
where ALL the staff were assembled to ‘listen to what I had to say’.Those that know me know I can talk for
England about Sam…trying to disseminate 15 years of knowledge in 60 minutes is
impossible but I tried to keep it ‘on track’ and sensible. I was impressed not
only that they listened intently but to the quality of questions I was asked. I
was further impressed that they all ‘stayed on’ in their own time to ask so
much about Sam..their thirst for knowledge about Sam has continued…They also
observed video footage showing what is presently possible…..a standard to start
by.

A small example, but of huge significance, being that they gave
him something to colour in (they have seen he can do this neatly), Sam of
course rushed it and the result was a pathetic attempt, they looked at it gave
him the task again and asked him to do it again, again same result, the third
time they clearly stated they wanted him to ‘do it properly’ (an expression
copied from home)..hey presto..perfect job handed in by Sam…that is ALL it
takes and that one incident has ‘broken the back’ of the problem..Sam now knows
he ‘has’ to do his best work at college..other schools stopped on the second
request concluding he could not complete the task and therefore had poor
co-ordination, problems with fine motor skills, Etc. Etc.

We have so very far to travel but at least we are ALL
pulling in the same direction….and THAT is all I have ever sought….now and only
now Sam has a fair chance..Thanks Anna

They say it is always darkest before dawn..well it’s been a long hard night..bring on the daybreak.

e-petition

ACT NOW

call for trained

Autism Advocates

Responsible department: Department for Work and Pensions

Every adult with a diagnosis of an Autistic Spectrum Condition who has to undertake a Work Capability Assessment or Personal Independence Payment Assessment should be offered an advocate at the first point of contact by the Department of Wo…rk and Pensions. The advocate must be experienced in working with people with an Autism Spectrum Condition. The Work Capability Assessment process and the assessment itself is placing adults with autism at a substantial disadvantage when compared to adults who do not have an Autism Spectrum Condition due to their impairment in communication and socialisation.See More